Amyloidosis involves protein deposits in tissues

DEAR DR. ROACH: I had an electromyographic test that indicated that I had carpal tunnel syndrome primarily in my left wrist. I had the surgery for carpal tunnel. During the surgery, they noticed a thickening of the lining around the tendons, and took a biopsy of the lining. The pathology report on the tissue removed was consistent with amyloid. I then went to a hematologist, who performed blood tests and a 24-hour urine test.

The diagnosis was amyloidosis. My reason for writing you is to see if you think my doctor should be taking a more aggressive approach with someone with this diagnosis. Would you please comment on this disease and discuss what types of treatment options are available? -- R.G.

ANSWER: "Amyloidosis" is a generic term for several diseases that deposit proteins into tissues of the body. Some types run in families; others are related to blood diseases, such as multiple myeloma; yet other types are related to inflammatory diseases. Without knowing what type of amyloid protein you have, I can't give specifics about treatment.

In all types, however, problems are caused by the deposition of amyloid protein into tissues. Carpal tunnel syndrome is frequently caused by dialysis-associated amyloidosis. The protein also can affect critical organs, such as the kidneys, heart and nervous system.

In general, treatment of amyloidosis is aimed at the underlying cause. If you have AL amyloid, the most common type, your hematologist will be evaluating whether you need treatment, including chemotherapy or even bone marrow transplant. Liver transplantation may be used for some cases of hereditary amyloidosis.

DEAR DR. ROACH:Can a person who has AIDS cook for his or her family and loved ones without fear of getting them sick? How long does it take to die once you are diagnosed with AIDS? How does someone with AIDS die? -- D.R.

ANSWER: HIV, the human immunodeficiency virus, is acquired usually through sexual contact, exposure to contaminated blood or passed from mother to child. There has never been a reported case where a person was infected through casual contact, such as sharing eating utensils or using the same bathroom. HIV has never been reported as being transmitted through saliva, tears or sweat. It isn't transmitted by insects, either. However, it's not recommended to share razors or toothbrushes, since these can be contaminated by blood.

The progression of disease caused by HIV is highly variable. There often is a fever and flulike symptoms at the time of first infection. Most people will test positive by the usual blood test within a few months of becoming infected. People with HIV often remain without symptoms for years; however, the virus continues to replicate and destroy CD4 cells, a key regulator of the immune system, during this time.

The term "AIDS" is reserved for advanced HIV infection with a specific, defining illness, such as Pneumocystis pneumonia; or a CD4 count below 200 (normal is around 1,000).

As far as prognosis goes, the most important single factor is whether a person with HIV infection is prescribed (and properly takes!) appropriate treatment. There certainly are many people who have had HIV for over 20 years without getting AIDS.

With very advanced HIV infection, the immune system is unable to fight off infections, but also, the body cannot fight off cancer. Since people with HIV can live so long, heart disease and any other cause is possible. Very often, people die with, not from, their HIV.

For people living with HIV and who haven't told their family, I recommend doing so. I know it's complex, and it may not be right for everybody, but it will help relieve stress for most.

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Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu or request an order form of available health newsletters at P.O. Box 536475, Orlando, FL 32853-6475. Health newsletters may be ordered from www.rbmamall.com.

Dr. Keith Roach

Dr. Roach regrets that he is unable to answer individual letters, but will incorporate them in the column whenever possible. Readers may email questions to ToYourGoodHealth@med.cornell.edu or request an order form of available health newsletters at P.O. Box 536475, Orlando, FL 32853-6475. Health newsletters may be ordered from www.rbmamall.com.

Last modified: May 24, 2014
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